One year ago this week, four-year-old Evie was admitted to the children’s heart unit at the Freeman Hospital in Newcastle. As this poignant milestone approaches, Evie’s mum Chloe, wants to raise vital awareness of the need for more child organ donors.
Evie, who has dilated cardiomyopathy, has had a tricky life full of hospital trips, Chloe from Middlesbrough says: “We managed to remain at home for nearly three years which is amazing, however it was inevitable that this would be the situation we would find ourselves in.”
“You have optimism that you might have a quick stay but the night before her admission on Valentine’s Day, I put Evie to bed with a strong feeling that it may be the last time for a long time.
“It hurts that we are still here and although Evie is doing well at the moment, there is no guarantee she can remain this way. Children usually have a long wait for a new heart, and I had the time to prepare for that reality when at home with Evie for three years.”
Reflecting on the last year on the children’s heart unit – the place Evie now calls home – Chloe said: “I would describe the past year as an emotional rollercoaster. We have watched Evie become so poorly several times and it is heartbreaking. From her initial operation to her machine not working, to sepsis, we have had our fair share of emotional trauma. Evie being well, is our only way of coping.”
Although they try to keep life as normal as possible for Evie and their son Theo – it is anything but – Chloe continues: “We are set in a routine whilst things are okay so me or my husband are always with Evie as the other one will be with our little boy at home who is in school. Theo will visit when he can at weekends or during the school holidays. It is very difficult, but we have no choice but to make it work. Me and my husband are like passing ships as we don’t get to spend any one-to-one time with each other.”
Currently, there is a significant lack of child organ donors resulting in children and their families waiting for a life-saving donation that tragically sometimes doesn’t come.
In 2021/22, just 52% of families who were approached about organ donation gave consent for their child’s organs to be donated. This represented just 40 organ donors under the age of 18. However, in cases where a child was already registered on the NHS Organ Donor Register, no family refused donation.
Angie Scales, Lead Nurse for Paediatric and Neonatal Donation and Transplantation, at NHS Blood and Transplant, said: “Our thoughts are with Evie and her family at this difficult time as they wait for the heart transplant that she needs.
“Sadly, Evie and her family are not alone in hoping for a life-saving call, there are currently more than 240 children waiting for an organ transplant across the UK.
“Around 40 children need a heart transplant and are relying on an organ donor of a similar size to save their life.
“For many children on the transplant waiting list, their only hope is the parent of another child saying ‘yes’ to organ donation at a time of immense sadness and personal grief. Yet, families tell us that agreeing to organ donation can also be a source of great comfort and pride.
“By encouraging families to confirm their support for organ donation on the NHS Organ Donor Register and consider and register children too, we hope to be able to save more lives of children, both today and in the future.”
Evie is taking part in a national campaign ‘Waiting to live’ which aims to encourage parents and families to consider organ donation and, it is hoped, register themselves and their children as donors.
As part of the campaign children currently waiting for life saving organ transplants were transformed into handmade dolls placed across the country with Evie’s doll hosted at the Freeman Hospital. It is hoped that the dolls and the real-life children’s stories will inspire more parents and families to consider organ donation and add themselves and their children onto the NHS Organ Donor Register.
Evie cannot leave hospital without the gift of life and her family are huge advocates of organ donation but understand that in order for Evie to get her transplant another family has to go through something unimaginable. Chloe said: “I think my only advice to those in that gut wrenching situation is to not be hard on yourself for whatever decision you make. It is a question people don’t prepare for, however using Evie’s journey and other children waiting could help spark conversations about seeing lives that could be saved from an organ donation.
“I think asking yourself about whether you would accept a donated organ for you or your child and if you could donate yours or a child’s organ to leave a legacy for that life.”
You can find out more about organ donation here and to learn more about the children currently waiting for transplant, hear their stories and add yourself and your child/children to the NHS Organ Donor Register, use your phone to search for the Waiting to Live Campaign.
